coming off Asacol question

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icanrace
Regular Member


Date Joined Sep 2007
Total Posts : 221
   Posted 1/21/2008 12:18 PM (GMT -6)   
for those of you that have taken Asacol & decided to come off it, how did you do it?
I want to know this from people who was having success with it and just decided they wanted to stop taking it.
ty
started Prednisone & Asacol on Thursday 10-4-2007

currently OFF Prednisone


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 1/21/2008 12:31 PM (GMT -6)   
After my first flare I was on asacol and decided to quit. I just stopped. I didn't talk to my GI and I was fine for 5 years. Then I started having symptoms again, very slight, and found that my UC spread from left sided to pancolitis. My Gi told me that if I had stayed on asacol my UC would not have spread.

I would talk to your GI before making any decisions. If they want you to stay on, get a second opinion. Just find out the facts before you do anything. The way I look at it now is a few pills a day to help me from getting worse is worth it. I don't actually know that asacol does anything. But i don't have any proof that it isn't helping in ways I can't tell.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08!
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 1/21/2008 2:07 PM (GMT -6)   
I am considering taking a break from it myself to see what happens.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/21/2008 2:15 PM (GMT -6)   
I stopped ascol cold turkey on 9/07/07 because my Doc's and I belived it caused my kidney disease. If you are hypersensitive to drugs containing mesalamine it can cause Minimal Change Disease (symptoms are edema and frothy urine, I have both). They also put me on Prednisone 60mg a day (this is to fix my kidney's and also take the place of asacol - dual purpose).

I went into a huge flare in Sept/Oct, I never flared so bad before in my life, I had D,B,M and horrible cramping I was white knuckling it. I was going 25+ times a day and had to miss work and also social engagments that I really wanted to go to and I did go to some but it sucked b/c I felt miserable and was worried about going to the bathroom.

My adivce if you decide to stop taking it, don't do it cold turkey, do it slowly and see if your symptoms start to return, do it like a prednisone taper.

Personally, if the drugs are not causing you any problems, I wouldn't stop taking it. JMO!
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


icanrace
Regular Member


Date Joined Sep 2007
Total Posts : 221
   Posted 1/21/2008 3:17 PM (GMT -6)   
I know what you all are saying and I appreciate it.
My doctor tells me to stay on it and makes it sound like I'll be on it for life. I'm sorry, but I don't believe there is a need for me to be on this for life but that's just me.
I don't know whether to taper or just stop. I thought anytime you got below (6) 400mg pill per day that you weren't actually getting any of the benefits of the drug...?
Anyway, I have a decision to make and hope that either way I don't make a mistake :)
started Prednisone & Asacol on Thursday 10-4-2007

currently OFF Prednisone


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5187
   Posted 1/21/2008 7:32 PM (GMT -6)   
It's not wise to drop your meds completely. You are likely to flare again & the symptoms could be worse. There's a possibility, if you have proctosigmoiditis, that you could maintain remission on Rowasa. I advise you to consult with a reliable gastro, though-- play it safe rather than be sorry in a couple months. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/21/2008 7:45 PM (GMT -6)   
I was switched to azulfadine and was lowered to a maintenance dose (half of the therapeutic dose), which I chose to stay on... even through years of remission. As far as I can tell, it's fairly safe over the long-term and is much safer than steroids or immunosuppresants.

If I was going to try to get off an ASA drug, I would taper very slowly rather than stopping cold turkey.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 1/21/2008 7:46 PM (GMT -6)   
Definitely taper. I quit Colazal cold turkey once and immediately had a nasty flare.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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Co-Moderator UC Forum


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/21/2008 8:54 PM (GMT -6)   
I've been in your shoes, I felt pretty good and quit the Asacol. Ever since, I am sooo bad and not responding to any meds and surgery is probably in my near future unless this Humira works.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm


quincy
Elite Member


Date Joined May 2003
Total Posts : 30853
   Posted 1/22/2008 12:55 AM (GMT -6)   
taper off by one pill a week.

Let us know how it goes.

q
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/22/2008 9:41 AM (GMT -6)   
"I don't know whether to taper or just stop."

tapering would be less likely to hurt you rather than stopping altogether, so if you plan to stop then why not just taper? better safe than sorry.

I really hope you are ok, and I hope I never, ever, ever, ever go through the kind of flare I went through when I stopped cold turkey, it really messed me up physically and emotionally and I am still dealing with it.
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 1/22/2008 10:51 AM (GMT -6)   
I know that I definately dont' need my prescribed 12 pills a day because I often forget to take at least one dose a day so I already know 8 pills works just fine. Perhaps I could go down to 4 a day?
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 1/22/2008 1:09 PM (GMT -6)   
disco - maybe you should try to get of the Entocort first as it is a steroid. I know they prescribe it for maintenance sometimes but I would think it would have more side effects.
Jessica 26/F
Asacol 3pills /three times a day(from 2 pills/ three times a day)
Prednisone 40Mg/day taper every 5 days(at 30 mg currently)
Culturelle once daily/ three times a day
Tried (Entorcort EC 9ml/day)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30853
   Posted 1/22/2008 2:31 PM (GMT -6)   
disco..is the entocort pills or enemas?

5ASA meds should be tapered by one pill a week at the very least.

I'd strongly suggest the use of rectal meds as well (no surprise there).

q
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 1/22/2008 4:18 PM (GMT -6)   
Ento Cort is pills I've never even discussed an enema with my Doc.
I am now down to 1 pill a day from 3.

My doctor wants me to do remicade but it honestly sounds more risky to the entocort and a much bigger inconveniece to take.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/22/2008 5:42 PM (GMT -6)   
disco, do yourself a favor and research the long-term effects of steroids. From long-term Entocort, I had a terrible fracture of my leg that required surgery, plates and screws in my leg, dissolving bone in my shoulders that required two very painful surgeries and I still don't have full motion in the right shoulder. I also had high blood pressure and type II diabetes. Other potential side effects are vision problems, including cataracts, muscle weakness and stomach ulcers. You might get all, some or none of these problems, but you need to know about them when you make your choice. The deal is with steroids, they make you feel so good but almost everyone has bad effects long term.

I recommend looking up new medications to see what the deal is with them. Then we can choose our poison. Literally.
Judy
 UC Forum Moderator
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


icanrace
Regular Member


Date Joined Sep 2007
Total Posts : 221
   Posted 1/22/2008 6:49 PM (GMT -6)   
Does anyone know if Asacol can cause elevated liver enzymes?
started Prednisone & Asacol on Thursday 10-4-2007

currently OFF Prednisone


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 1/22/2008 7:22 PM (GMT -6)   
This is interesting! I had been on 8 x 500mg Pentasa since Nov, then for a week GI told me to half dose as thought it may be causing urgency & D, then told to stop totally.
From some of the posts being a GI seems to be pretty much like being an economist.....not an exact science!
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC). 1 x Solofalk Enema/day 40mg Prednisolone 35mg Prednisolone 30mg Prednisolone 20mg Prednisolone 25mg Prednisolone 20mg Prednisolone 15mg Prednisolone 4g Pentasa/day

Taken off Pentasa and now on 15mg Prednisolone, Omeprazole 20mg, 2 x Calcium Adcal D3, and started 50mg Azathioprine/Imuran.


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 1/22/2008 7:30 PM (GMT -6)   
Icanrace,I don't mean to sound harsh,but what does "just decided to come off it" mean?Anyone that has dealt with this for a while will tell you,they don't "just decide" anything.If you're having unpleasant side effects,such as nausea,speak to your doc.If you're feeling okay,but worried about your liver(which is an issue with Asacol),get a regular LFT test(via blood sample).

I don't mean to sound contemptuous,but you're way too early in the game to "just decide" anything!As for not believing you need pills for the rest of your life,it's a mute point.Do you want sound state of mind and body,or a need for the toilet the majority of the time?

To clarify furthermore;I've been on and off Asacol for several years,of my own accord.It's ALWAYS a bad idea,the ***** comes back to bite me in the ass(pun intended!).If you are in remission using Asacol and aren't having any nasty side effects,DON"T STOP!It's really that simple

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 1/22/2008 10:11 PM (GMT -6)   
Yes, Asacol can cause elevated liver enzymes. When I initally started Asacol I had monthly blood work for three months, then blood work every three months, which I still do.
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
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disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 1/22/2008 10:54 PM (GMT -6)   
thanks for your response's to my steroids but bottom line is; the steroid side effect just don't hit me like they hit some of you. And I've decided to go quality of life vs. longevity nuff said.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/22/2008 11:32 PM (GMT -6)   
SilentLucidity, remember we're here to support one another, not to judge. Let's try to respect the opinions and decisions of others even if we disagree with them.
Judy
 UC Forum Moderator
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 1/23/2008 3:28 AM (GMT -6)   
Disco, I hear what you're saying. However, I the thing that sticks in my mind when considering that, is what kind of 'quality' of life am I getting when my bowel ruptures because i didn't follow the treatmentI was being told to and either kills me, has me suffering with horrible pain, or it all goes wrong when I'm rushed into hosiptal at 2am to get the rupture fixed and I end up crippled through infection/surgery. etc. etc?
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC). 1 x Solofalk Enema/day 40mg Prednisolone 35mg Prednisolone 30mg Prednisolone 20mg Prednisolone 25mg Prednisolone 20mg Prednisolone 15mg Prednisolone 4g Pentasa/day

Taken off Pentasa and now on 15mg Prednisolone, Omeprazole 20mg, 2 x Calcium Adcal D3, and started 50mg Azathioprine/Imuran.


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 1/23/2008 4:23 AM (GMT -6)   
Judilyn,I'm sorry if my post came across the wrong way.I was merely trying to establish why Icanrace wanted to stop the Asacol.My post was neither abusive or offensive,perhaps a little condescending,although that's at the inference of the reader.

My own stupidity has cost me dearly in the past and I would hate to see someone else suffer needlessly.Icanrace hasn't mentioned experiencing any ill effects from the drug and it seems to be working.The liver thing can be monitored through blood tests.Therefore I think it's madness to stop taking it.I have tried to put that point across clearly and succinctly,if perhaps somewhat strongly.However,I would never be abusive,or consciously offensive to anyone on this board.

Dansky
Veteran Member


Date Joined Mar 2005
Total Posts : 2844
   Posted 1/23/2008 5:45 AM (GMT -6)   
Silent Lucidity,

It is so easy to upset others with the use of text because it is not possible to show facial expressions or fully explain our reasoning for the words we use, furthermore because we are all on so many medications our minds are not always thinking as straight as maybe they should be.

Because of that, we moderators have to be quick off the mark and post reminders to ensure that we all continue to think carefully about what we are typing So often we let what appear to be genuine harmless comments/paragraphs slip by and before we know it world war 3 has broken out because of the way someone else percieved what had been written.

Judilyn used her discretion after reading your post and decided she felt it required her to post a reply, it is not a suggestion that you intended to appear abusive nor offensive, but she has been around on this board for a considerable amount of time and she is fully aware of the implications of allowing certain words/comments to be used without her interaction.

For what it's worth I agree with you in relation to seriousness of stopping taking medication, but as we know it is a personal choice and however many threads are on these boards discussing the importance of continuing meds, there are those that choose to try things their own way.

It is the purpose of the forum to offer caring supporting and advice to others, however strongly we disagree with the choices others make. It is very important that we all proof read our own posts before submitting and question whether or not what we have typed may be percieved by others to be offensive.

Thank you so much for your understanding.

Take care.

Dave
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
Azathioprine, Beloc-Zok, Calcichew, Citalopram Hydrobromide, Dihydrocodeine, Mydocalm, Paracetamol, Pariet, Prednisolone, Sulfasalazine, Zopiclone.
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